Graham has been transferred to rehab. Yesterday we went for a second opinion and there was quite a reaction. The neuro tried to admit him straight away to the hospital but no beds. He was a bit disgusted with treatment so far. Today Graham had a follow up MRI arranged by this guy and we go back for results tomorrow. I can't even consider the expected results I am so used to bad news.
We were given all the results so far to take with us and so of course I read them all. Very disturbed to read that from 17th March MRI in comparison to 28th March MRI report stated that there was no change. This is NOT what the neuro told me. He told me that it had grown and that he had 2 weeks to live. I am so overwhelmed by this I don't know what to think.
We went to the acunpunturist Saturday and he was very good.

Dear Bronwyn
So pleased to hear Graham has been moved to rehab. I'm sure you were a little relieved to hear the neuro's opinion on the previous treatment (mistreatment) you had received?!!
I don't know what to say about the previous reports you have seen & the difference in what you were told by the Dr? This is very puzzling, perhaps your new Neuro could enlighten you more on what you've read?
Glad to hear about the acupuncturist appt, I am a firm believer in this kind of treatment & have managed to regain some of my health (from 2005) with acupuncture.
Keep positive & strong.
Thinking of you,
Cheers, Angie.

:( Things have decidely got worse. My what can happen in a day!
Monday saw the new neuro. He kind of freaked and tried to get Graham admitted straight away for evaluation. Couldn't get a bed so Graham went back to rehab. and back the next day for a MRI. Worried all night and terrified to go in.
The worry was justified as the tumour has doubled (or more) in size. It is now classed as inoperable, only a 60% debulking offered. BUT. Graham has regained a lot of his motor skills, is more alert, doesn't need pain killers and has insight. He also has better temp. regulation. He asked the neuro some relevant questions. Thought about it and had opinions.
The neuro and I looked at each other and went WOW!
I was then told to discharge him from rehab. and get onto pallitive care and take him home. The rehab were marvellous. All the alternatve things the neuro suggested they got in that night for me. WE both cried and cried and talk about death and funeral.
Overnight phone calls were made between medicos. The Alfred argues that radiation has done something as he has regained so much and not deteriorated. That the clinical signs are more important then MRI. That they would not have sent him to rehab if they didn't believe he had some months left. That the tumour could well have grown after the op. and before radiation to that size anyway. That no-one had a base line as no-one bothered to check him.
Then the back argument was that you fluctuate with brain tumours and things can happen to come back.
This morning the neuro. rings and says treatment begins Monday be at the hospital at 9am. He has not been given the right to decent medical treatment and he deserves it. So Monday he definately starts chemo. but he has bad radiation burns and they don't think he will heal if they operate now.
So it's all on again!I don't know what to believe. His neuralgia has nearly gone. It could be the drugs, acupuncture or regression of the tumour?
Acupuncture was excellent and he is looking forward to more. He complained of constipation and the guy goes I'll fix that. Well the next day he certainly fixed it. I told him I prefer the constipated Graham. No other treatment was offered as he felt acupuncture would be all he needed. He said a few treatments for the neuraligia. At the end he said we had enough problems to worry about so no bill.
Today Graham was told what occured. That Monday treatment. As he was given the you are dieing speak we let him drink what he wanted and said bugger the electrolyte problem. Today the nurse took his drink out of his hand and said well that's over, back on fluid restrictions.
In the meantime pallitive came in and saw us. They rang the new neuro for an approx. date for the end but this was refused to be given.
They said they don't think they are now needed as Monday things could all change. But that thing is huge!
Angie I hope your wonderful brother is steering a more uneventful course at the moment.

Bronwyn
Oh My Giddy Aunty! I don't know what to say with the latest revelations re: Graham! Thank God Graham is lucid again & you are able to support each other through all of this! How is Catherine holding up?
What kind of chemo are they starting him on? Why does he need to be in hospital for this? It would be more preferable for the both of you to go home at this point (if the treatment allows), with Graham having recovered sufficiently.
A patients' condition can change rapidly with these Bastard tumours & I can understand the medical teams appearing to be "clutching at straws"! Each individual is very different & I'm guessing - because of this - you are hearing different arguments as to "why" Graham's condition is the way it is! I pray your new neuro will deliver the best & most professional medical treatment to Graham & that you will continue to be supported & comforted by family & friends.
I pray the radiation burns will heal sufficiently should you opt for a further debulking of the tumour. Perhaps the chemo will shrink the tumour enough for a more successful debulking?
Graham definitely deserves more professional & efficient medical treatment. You are in my prayers & thoughts constantly.
My Bro - Mark - is steady at the mo. Thanks for your thoughts Bronwyn.
Hugs to you all.
Cheers, Angie.

Just got back after having been through three different specialists. It was tag team. The tumour is all through the frontal lobe and then some. The left front is removable (rather ironic as that is where it started and someone decided to leave it there) the right is very touchy and has wrapped around 2 arteries. Sounds shocking doesn't it? The oncologist wants another debulking so the chemo. has a better chance, so on Thursday afternoon in he goes. Graham made the decisions for a change and has taken control of it. They are going for a 60% removal followed by Temodal 2 weeks later. They say it won't be like last time as they will not take him of any meds., watch the dexa and monitor his electrolytes real close. Then if all goes well the Temodal will have less to attack. Surgeon seems better and pretty honest and has links to Charlie and says this is what Charlie also would go with. I suppose you could call it his last chance.
I also suppose when you read this you think poor bastard. I know I would if it was someone else. I was reading someone's story in another cancer site and it was a littany of troubles until death. Every bit of you hopes that the person you are reading about wins the battle but in this case no. And what a fight they had. Graham's brain tumour paled into insignificance. There is so much worse out there and cancer can be a very cruel being. This has change me in so many ways. I get upset over any suffering now. My heart broke over that little boy found down the mine shaft and it haunts me that people can do these things. On the other hand I have been overwhelmed by the goodness in people and who have offered a helping hand to me. Does this sound like an eulogy? I had better stop. Thankyou for being there it has helped.

Thanks for taking the time to update us. There is hope, try and remain positive. You will remain in control of the situation if you do.

Crying is common and can be a sign of mild depression. I found myself crying at odd times. Focus on the good news for now. We watch plenty of comedies. Its difficult in hospital but try finding a way to laugh at least once a day - jokes, gags - whatever works for you.

There will be more steps forward and backwards. Its great to hear both of you making decisions. You will find great kindness that will reafirm your belief in humanity.

All that I can say is that I try to concern myself only with those things that are within my control. I focus on my rehab, family and being involved in my treatment. Its a very positive sign that Graham is still involved. My best wishes to both of you. We are walking through this journey with you.

The surgery lasted 7 hours and went well. He has a slight weakness in his right leg but otherwise well. Has come out of it fairly well and in in a ward already and eating. This is our fifth hospital and the best food so far. I am thinking of doing a lonely planet guide to hospitalisations.
Still a lot left. Waiting on the MRI post op. to see what went. Prognosis is still not good. Hope chemo. does something. The surgeon told me to try all the alternative approaches and go buy B17 and DCA.
Have learnt absolutely heaps. The first op. didn't remove tumour, just cleaned up bleeding, released pressure from hydroencephalitis (spelling?) and did biopsis. Because no space was created in his head swelling occured, pressure increased and he went down hill. As radiation creates swelling, he again went downhill as the swelling put on too much pressure.
I now know "even if it is inoperable as much tumour as possible must be removed so that swelling can occur safely".
Graham has been left with space to allow the tumour to grow, account for swelling and let there be time for chemo. to kick in. And ever the pain in the arse me has requested that he be given the rest of his radiation fractions.
Does anyone have any thoughts on this? Has anyone gone back and had this safely? Of course there is the necrosis terror and we don't want that.
It seems that we reach the end and then someting arrives and saves us but only for a short time. That everything is a last minute just in time. For instance last Wednesday we had Graham home for few hours and all his mates from work came. They had bought him a fancy TV for a present and wanted to give it to him personally. Well that very day his claim forms for his disibility turned up so I could simply get Graham to sign them on the spot and hand them to his boss.
Having a bit of a crash myself at them moment especially after hearing the prognosis. Perhaps I need it, to have agood cry, let go and move on.

Glad the operation went well. I wait in anticipation for the first edition of the lonely planet guide to hospitalisations :).

Afraid I can't give an opinion on the radiation, personally I'm opposed to any form of radition - but that is my personal choice.

I'm sure Graham enjoyed the time with his mates. Try to stay positive and focus on the good things that are happening - I realise that good is a relative term in this sort of situation. You are doing a great job!

I do hope Graham's "good" condition continues, & the surgery will prove to be the ideal for the benefit of the chemotherapy.

My Bro - Mark - ceased radiation after 4.5 weeks. He was in bad shape with brain swelling. The Oncologist at that time thought it may have been a reaction to the chemo but Mark has taken it regularly since his debulking in May without any side effects (except for tumour growth!!). Radiaton was never mentioned again after his inital treatment because of his severe decline whilst doing it, & Mark has never been referred back to Oncologist, didn't like him anyway! So it's a good thing.

I was so pleased to read that Graham was able to go home for a few hours this is a real positive for you all. It must have especially been good for Graham to experience some "normality"!

I admire you Bronwyn & your journey so far has been an inspiration. I continue to pray for you all.

Graham update. The day after surgery Graham developed clots in his lungs so back into high dependence he went and was given blood thinners. Luckily he tolerated it well and there were no leakages anywhere from the surgery. He is now back in the ward and is still being given injections of thinners just in case.
Once again his electrolytes have gone haywire and has been put on a 600ml fluid restriction. He has an endrocologist (sp?) who is anal and determined to work it out. Who cares that he has had it for 8 years and has been able to manage it pretty well himself. That is the only reason he is in hospital. He has been in for 9 days and they have shifted him 6 times.
His electrolytes were perfectly normal the Monday after he was actually allowed home for a weekend. I am thinking of demanding his release as I'm rather over it at the moment. Graham is getting quite depressed over it all and wants to go home and actually have a cup of tea unhindered. I feel that he needs time off from being a patient.
I was thinking the other day if you had hindsight what would you definately do different. I would probably investigate the surgeon options a lot more and not go with the first at hand.I'm interested in your thoughts.

Given the time again I may have done some things differently. Having private health insurance meant that we could choose the surgeon. We have kept our options open if I need surgery again.

I didn't like hospital. It feels like you get treated there and recover when you can go home. While you nap during the day, you're constantly woken up at night - these are patients at risk of having seizures.

Be careful of checking out if he is not ready. 15% of cancer patients die from clots so they should taken seriously. I have been on warfrin since having leg clot and will stay on them until finishing chemo.

Having said that they can be depressing places. Next time once I make the rehab ward, I will seriously think about checking myself out. There is a part of you that knows and you become more disgruntled the closer to checking out.

Depression is not a sole reason to check out early - if you weren't mildly depressed at some stage with this illness then... I am interested in the role of depression in our illness and know of one tri-cyclic that is showing promise in treating cancer and depression.

The people I felt sorry for were the spinal injury cases. Some of them were in there for over a year. Yet they wre among the nicest people in there. I agree with your sentiment that people should only be in hospital as long as they need to be. Don't be afraid to discuss it with your doctors. Although he may feel like it he's not in prison.

• “....Dexamethasone is frequently used in the therapy of brain tumor patients. We investigated the effect of dexamethasone on the proliferation of three short-term and four established human glioma cell lines in vitro, using a microculture tetrazolium assay to determine growth rates. In one short-term culture and in one established cell line dexamethasone consistently stimulated the proliferation in a concentration-dependent way. The proliferation was maximally enhanced at a concentration of approximately 0.1 microM. In these two cell lines a relatively high level of glucocorticoid receptors was present, whereas low levels of glucocorticoid receptors were found in the other cell lines. In addition, we demonstrated that the stimulatory effects of dexamethasone on the proliferation of the glioma cell lines can be antagonized by the antiglucocorticoid RU38486. The results demonstrate unequivocally that the glucocorticoid receptor plays a role in the growth stimulating effect of dexamethasone.”

• “These results indicate that the growth of U87MG human malignant glioma is dependent on corticoids. The antiproliferative effect of RU486 appears to be due to the inhibition of binding of glucocorticoid hormones to their receptor proteins. Our results suggest a new therapy for some brain tumors, such as malignant gliomas based on the steroid hormone antagonist RU486.”

1997: Dexamethasone inhibits apoptosis in C6 glioma cells through increased expression of Bcl-XL
http://www.springerlink.com/content/7r22113065664351/• “.... The glucocorticoid dexamethasone (Dex) has been reported to modulate a number of signaling pathways and physiological processes, including apoptosis. This study was carried out to investigate the cytoprotective mechanism of Dex in C6 glioma cells. Pre-treatment of cells with Dex inhibited apoptosis induced by staurosporine, etoposide and thapsigargin. Apoptosis inhibition correlated with blockade of mitochondrial cytochrome c release, abolition of caspase-3 activity along with inhibition of caspase-9 and PARP cleavage. Dex-mediated cytoprotection coincided with the induction of the anti-apoptotic protein, Bcl-XL. The specific glucocorticoid receptor antagonist, RU486, reversed the anti-apoptotic effect of Dex and prevented Bcl-XL induction. Here, we show for the first time that knockdown of Bcl-XL expression with siRNA reversed the protective effects of the glucocorticoid in glioma cells. We conclude that Dex-mediated inhibition of apoptosis in C6 glioma cells is through induction of Bcl-XL. “

I haven't been on her for over a week but am you are never far from my thoughts.

How's Graham, did you manage to convince the Dr to let him come home? I hope so.

The depression of being in hospital is very relevant after being ill in 2005 & spending 5 weeks in hospital, I know all about it. I must also warn you that the medications & the illness itself will cause depression & you should be talking about this with your medical team.

MY Bro suffered from a leg clot after his 2nd surgery & has been on blood thinners ever since. He has some lovely big bruises on his tummy from the Heparin injections. I hope Graham has overcome the problematic clots he was having last time you posted?

Please give us an update when it it convenient for you? How's Katherine doing?

As for your question about hindsight I am really not qualified to answer on my Bro's behalf - next time I catch up with him on the GC (face to face) I'll ask him his opinion.

:D Graham is home!!! Everything stabalized and he was given the okay to come home.
Blood normal. Salts normal. Clotting only on Warfarin orally.
Neuraligia nearly a week without it. Coming back a bit now. Have reduced meds from 1800 to 300mg. Think it has been fixed with acupuncture. Today went to the oncologist and he has finally decided that he is well enough to have Temodal so on 350mg x 3 daily for 5 days cycle.
Also checked in with the GP and had a chat. Graham is a bit like a zombie, slurred speech, tremors and she said that's the Dilantin. He has never had a seizlure and is on 300mg each night. I asked the GP to lower dosages and she said no way I'm not touching his meds! Can anyone give me advice on this? Can I drop the dosage? Don't see the Neuro till 14/7.
He stayed in The Royal Melb. until they settled his salts. The endor. found Lasix did the trick. Some strange interaction he explained. At Rehab. as his salts were normal so they took him of it and they assumed he was on it because of the lungs. See no-one talks to no-one.
Graham is also on a drink I make as suggested by the neuro. of B17.
It is so hard keeping it together as we seem to travel the state for various things as he doctors are all over the place. I am worn out after 80 days in hospital. AND NONE OF THEM FIXED HIS SNORING!

No doubt it’s worn you out, keeping up with doctor’s appointments, the stress of having to deal with all this as a carer and the responsibility you naturally feel to care for him and research any related issues that are of concern to you etc.

I presume that Graham didn’t snore before the op, well apparently many develop sleeping problems post surgery and 30% develop a snoring problem after traumatic brain injury (and neurosurgery qualifies). Perhaps that will lessen over time and something to talk to the people in rehab about. Also bear in mind that some drugs that relax your muscles and cause the tongue to fall backward can cause snoring. Relaxed throat muscles may draw in from the sides and narrow the airway. Maybe think about separate rooms so you can get a good night sleep and keep up your own energy levels during the day. It may resolve over time or once his medication is taper down in dose.

GP’s are generally a bit paranoid about making such decisions especially if he’s in the hands of Specialists and they have recommended certain doses of medications etc and perhaps that's a reasonable call given they're specialists and GP's aren't.

If this helps, even if he’s never had seizures before they are highly likely just after neurosurgery so anti-seizure meds are used in most cases post-surgery as far as I’m aware. Different ones can have different side-effects but interestingly many can also help with the Neuralgia you mentioned. It may not have been the acupuncture that helped with the Neuralgia. Here’s a good article on Dilantin for Trigeminal Neuralgia and a range of other medications many of which are also anti-seizure meds. They are usually tapered down in dose over time to find the lowest effective dose so for the moment perhaps best to stick with the dose prescribed. It might be a bit higher than necessary but usually they don't want to take any chances of major seizure after neurosurgery.

A good article on Trigeminal Neuralgia below and there is a section that relates to brain tumours and neurosurgery during which nerves can injured a little. Also talks about different meds that can be used to treat both TM and seizures. Different ones may have different side-effects so you could do a bit of research on the side-effects of all the meds noted in the article:

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